I have a chronic disease and I’m constantly reading blog posts about things to avoid when dealing with your friend with a chronic illness. A lot of the time they share common themes, a lot of the time they mention points I don’t agree with, or find relevant. So here’s mine:
1. Don’t put me in the too hard basket
I’m hard to feed. I have low to no energy. I’m unable to be as active as I’d like to be. I still want to hang out with you. There are still things we can do, I’m pretty good at adapting activities to suit. If we go somewhere and all I have is a glass of water and a side of fries – don’t take offence. I know how to work my body and if this is what I’ve got to do, its not a bad thing – this works for me, this is how I can still hang out with you. Trust me – I’m still having fun.
2. Don’t judge
Please. If I have to say I can’t do something tonight, its not because I can’t be bothered or I’m not interested – its because I am physically unable to.
If I’m home sick – I’m not having a great time – I’m either lying in bed, or on the lounge – or I’m sitting on the toilet. I’d rather be at work – trust me.
If you think fresh vegetables or fruit will heal me, and think making me feel bad for eating McDonalds fries for lunch, plain pasta, or gluten free toast, maybe consider what I used to eat – and what those ‘healthy’ foods do to my stomach – Explode is the short version.
3. Don’t treat it as a competition
I have to start self injecting- please don’t tell me you know what it’s like because you injected hormones for IVF. You got a baby, I got a rash and a hope in hell that this would make me a normal operating adult.
Your food poisoning is not my chronic IBD.
Your glandular fever is not my permanent, life long, chronic disease.
In return, I promise to be empathetic when you tell me about your struggles.
4. Don’t give up on me
One day I aim to be healthier than I am now. I hope when that time comes we’ll still be in contact, and still friends. Encourage me to get through this – its not easy, mentally and physically.
Somedays you might think I’m normal and then be disappointed the next. So am I. You’re welcome to ride this roller coaster with me.
5. Don’t minimise this
I have a chronic disease. “You’re still not better yet?” is my least favourite rhetorical question. Chronic diseases are not a cold you get over in time. When I get teary at having to go to hospital for more tests don’t tell me that it’ll be easy because I’ve done this so many times – it doesn’t actually get easier – those risks in time get higher as you rack up more and more anaesthetics. They don’t have a frequent flyer program for pathology tests, or colonoscopies.
Somedays I am in a funk. Don’t tell me that if I just thought positively I might be healed. That’s bullshit and you’ll just make me angry. I get out of bed each day and drag my butt (sometimes sore butt) – there is no bigger optimistic act. I plan holidays. I plan my future. I am positive that one day I will get a break!
6. Don’t be afraid to call my shit
I lie. My doctor knows this. It’s why he asks me how I am twice, knowing the first time I will automatically respond I’m good, fine, okay. If I say I’m good, fine or okay – there’s at least a fifty percent chance that I am lying. I am often not ok. I am sometimes afraid of admitting when I’m not, because people like to tell me to be positive (more positive), or that maybe I’m depressed and its all in my head. The few times someone has said to me that ‘you’re not, but that’s ok’ – that means a lot. That means you’re actually looking at me. Actually caring about me. You actually know me.
One day I aim to be better able to handle this. Until then, if everyone was a little more understanding of everyone around them – that would be great.